English
Spanish
French
German
Italian
Dutch
Russian
Chinese (Simplified)
Japanese
Hindi
Hebrew
Portuguese
To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
A delicate matter for female travelers with FSHD
Tips and tricks for managing urinary incontinence Editor’s note: This is a summary of the May Women on Wellness Zoom meeting. The members met to discuss their concerns and solutions around toileting while traveling. Note, many of these solutions are applicable for men. Thank you to Ranae Beeker, RN, and the WOW members for this…
Collaborating to collect clinical trial data
FSHD Society and Critical Path Institute will aggregate data in C-Path’s Rare Diseases Cures Accelerator-Data and Analytics Platform The FSHD Society announced that it has partnered with Critical Path Institute (C-Path) to facilitate the integration of clinical trial data from…
Upcoming Events
CarePartner Hour – Going to the Doctor
Zoom Virtual Meeting8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all CarePartners to join us this month! Taking a loved one to the doctor can bring its own challenges. Doctor’s offices can be surprisingly inaccessible to a person with FSHD, for example if the waiting room chairs are hard to...
Women on Wellness
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support...
Wellness Hour – Ask me anything
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will answer your burning questions about FSHD...or try to. If she doesn't know, she will be mingling with the world experts later this week at the...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.